Sun burn and Scrabble

In the last blog post, you will remember that Tabby spent all Christmas Holidays in Hospital. When she got home, things gradually returned to normal – back to school, tennis lessons etc – but Tabby’s cough never really settled. Frustratingly, on the penultimate day of school before the mid-term break in February  Tabby’s temperature rose up towards 40C. Her blood tests showed she really had no white cells so we were back in hospital with a recurrence of her chest infection.  A “Ground-Hog Day” sort of moment.  We were beginning to wonder if she thought of Ward 2 as some sort of “Holiday Club”

Any way we passed the days  making things out of lego and playing scrabble. I have to say that she is pretty good at Scrabble and has a good vocabulary. The big problem, however, is adding up the scores at the end – as you can see in the photo.

Running out of fingers

During the consultant’s ward round at the week-end, the duty consultant came into our room and we had a long discussion about Tabby’s chest infection, her anti-fungal treatment and  her blood results. At the end of this he turned to Tabby and asked “Well Tabby, is there anything you would like to ask?”

Tabby looked up from her iPad and replied “What’s the longest river in America?”

Well, he did ask!

Following our half-term blip we once again got back to our relative normality. It is ironic that having sailed through 16 months of “maintenance therapy” up to Christmas 2013, it has been  the last 4 months which have been the most problematic. I suspect it relates to her recent fungal chest infection, which despite appropriate treatment is unlikely to go away until her chemo finally stops. One (of many) of the problems with Tabby’s antifungal medication is that it causes significant photo-sensitivity, i.e. she gets sunburn very easily. I suspect she is the only child in her  year who is already using  sun lotion and sun-block on a regular basis. Even after a bit of sunshine she gets very red. Anyone else had sunburn here in Edinburgh so far this year??

With the appearance of our first dry, sunny,  spring day  (and appropriately sunblocked) we went for a cycle around Dundas estate. I should point out that Tabby cycled while Donella and I jogged along beside her. A woman walking her dog suggested that Tabby was our trainer.

A week later we were invited to cousin Jessica’s 18^th Birthday party at The Blytheswood Square Hotel in Glasgow. A chance to catch up with friends and family and for Tabby to chat with Charlotte over pre dinner cocktails.

Okay so its not Courcheval - but at least its not crowded!

As the Easter Holidays began we were keen for Tabby to do something different. It has been four years since Tabby was last on skis so we booked some lessons at Hillend dry ski slope. The weather was grey miserable and wet but this did not seem to put Tabby off.  

Looking good

We obviously were concerned that in the last 12 months Tabby has broken both wrists falling of her bike then falling at tennis. Skiing, therefore may not seem entirely sensible. Anyway she came through unscathed and is keen to do more. Result!

 So what next?  Well as I mentioned at the start, Tabby has been on her maintenance chemotherapy for the last year and a half. This is made up of 20 x four week cycles. The last and twentieth cycle starts today!  7^th May Tabby has her final spinal chemotherapy as well as, hopefully, her final bone marrow biopsy. We will then have a nerve wracking follow up appointment on 4^th June to hear the results of her bone marrow biopsy. We all hope and pray that this will be the end of two and a half years of chemotherapy and the last of her Leukaemia. In good old “Blue Peter” tradition “We hope we will have some very exciting news in the next post!”

As ever, thanks for reading,

We’ll keep you posted

The Lawsons

Hair and nails done

First post of 2014

            My apologies for the 5 month gap since the last post on Tabby’s blog but it hasn’t all been my fault. Firstly my PC is slowly sinking in the west and can barely raise an e-mail. Secondly,  “No new is good news” - Tabby has been cruising along well with her maintenance therapy – until December that is!

 Since the last post I did indeed manage to climb Kilimanjaro with a wonderful group of people raising funds for “It’s good 2 give”. Thank you to all of you who helped me raise £12,000 for this charity. It was an incredible experience and had everything required for a “mid-life” crisis.  I would recommend it to anyone looking for a challenge and a bit of adventure.

Another plaster coming on

Having broken her  right wrist earlier this year, Tabby made it a matching pair and broke her left wrist – playing tennis -  at the start of December. She had played a rapier-like back hand and fell over landing badly on her left hand. Plaster time! (again).

 

Christmas market with Tabby and Donella

Although Tabby had  been chosen to be Mary in the church nativity play we were aware that on the day of the performance she would be in the middle of her steroid week – never a good time. Steroids tend to make her grumpy, moody and miserable possibly taking method acting to its extremes! The forearm plaster was the last straw and Tabby decided to pull out. We did however get the chance to see our friend , and "It's good 2 give" patron Grant Stott in the pantomime -  Peter Pan at the King's Theatre.

 

The "Lawson" box at the King's

Mischief full of the Christmas spirit

Throughout November and December Tabby had a series of coughs and colds with courses of various antibiotics.

On Christmas Eve, however, she had another temperature – back to the “Sick Kids” for a check up.  No Neutrophils! Tabby was admitted to Wd 2 back to our old room we had stayed in 2 years earlier when Tabby first became ill.

Christmas morning at the "Sick Kids"

At Midnight, Santa and the Christmas Fairy visited us in Tabby’s room and left a stack of presents. On Christmas Morning, the family visited us and Olivia took over and allowed me home for Christmas Dinner with the rest of the family (any excuse to avoid brussel sprouts). Wined and turkeyed, Ewan then us back later in the afternoon. All this time, Tabby remained on 2 hourly observations and 4 hourly  antibiotics. Sleeping on a camp-bed in Tabby’s room was obviously tricky!

Tabby home for Boxing Day

On Boxing Day, Tabby was allowed home for the afternoon (between iv’s) to let her see everyone and open some of her presents. Over the following week, Donella and I continued to take turn about with the overnight shift. Tabby’s temperature and neutrophil count became the subject of  regular texts and e-mails – when wi fi allowed.

Tabby had a CT scan of her chest and on Hogmanay, after a week of antibiotics, Tabby’s temperature was still not coming down. She looked a bit rough! She was reviewed by a respiratory consultant who confirmed that she had a significant Pneumonia and recommended a bronchoscopy under general anaesthetic in order to find out what bugs were causing the pneumonia.

I have spent the last 30 years seeing patients getting anaesthetics – but when its your wee girl... Anyway after her bronchoscopy we took her back to the ward where, after an hour or so, she perked up and we watched the usual Hogmanay television.  I had my can of Carlsberg that I had smuggled in earlier that day and Tabby promised not to tell.

They did say the anti-fungals would have side effects!

 

Tabby’s bronchoscopy confirmed she had a “fungal pneumonia”. She was commenced on and fungal drugs – horrible. Her condition, however, rapidly improved and a week later she was discharged. Although she missed the first week of school, Tabby returned to school 2 days ago. Maybe back to tennis tomorrow?

Recovering from Tabby's bronchoscopy!

If Ewan leaves his lap-top behind, the posts will be regular again.

Once again thanks to everyone for their love and support over the last few weeks especially every one at Kirkliston Parish Church. A special thanks to Maggie McC for her generosity in providing food deliveries for Ewan and I, especially a wonderful lasagne which has converted Ewan into a bona fide lasagne lover  

 

Thanks for reading and all the best for 2014

The Lawsons

Schools out for Summer!

I’m sitting in the day-case ward at the “Sick Kids” Hospital just now waiting for Tabby to come back from theatre where she is getting a further dose of spinal intra-thecal chemotherapy. She is so cheerful and happy and chatting non-stop to all the staff we have met this morning. It was me who had a slight lump in my throat as she fought to count up to 14 before falling asleep. I managed to hold it together!  I am taken back to the ward to await her return.

The school holidays have been good. We’ve actually had a summer – which certainly makes a change. Because of ongoing treatment Tabby cannot be away for more than 3 or 4 days at a time and certainly not far afield. London is ok because they have “The Royal Free Hospital” who could see Tabby if there were any issues.

Chilling in Lochcarron

At the start of July, Tabby and Donella spent a few days at Grannie and Grandpa’s house in Lochcarron. As you can see, they had glorious weather. Tabby and Donella went cycling and jogging each day. It seems Maimie the sausage dog simply could not keep up. I suspect Maimie lost a few pounds that week!

 

New Plaster

In fact this summer has been the summer of cycling and back home Tabby has loved cycling her Christmas present bike alongside Donella when she goes for a jog. However, just as Christopher Froome was leaving his “Tour” rivals behind on the Ventoux. , there was a small incident at the back of the peleton, where Tabby and best friend Danielle collided and came off their bikes. Poor Tabby got a broken wrist and was in a plaster for 4 weeks. Fortunately, she did not need an operation or manipulation of the fracture. It did however put pay to her swimming and tennis and beginner’s Hockey Camp.

Happily, the plaster did not stop her going to see lots of kids shows at The Edinburgh Festival Fringe. At one show, we made the bad mistake of sitting in the front row before the inevitable happened – I was called up on stage to demonstrate some cool “Dad dancing” much to Tabby’s embarrassment. I have always believed – “If you’ve got it, Flaunt it”!

Festival Fringe at George Square

Anyway, the plaster eventually came off just in time for us to go to London for a short visit. We took the train down, booked into our hotel and spent the afternoon in “Hamley’s” in Regent Street. Five floors of toys and games – wow!  She added a few more to her “Monster High” collection. If only she had been interested in Scalextric. After a wander around Carnaby Street we had dinner in Covent Garden.

The next morning we bought tickets for a “hop on hop off” open top bus tour of London. We hopped off at Westminster Abbey and took photos of the Abbey and Big Ben, hopped off at Covent Garden for lunch then hopped off at the Tower of London. We did the full Tower of London tour before a boat trip back to Westminster Bridge. That evening we went to the theatre and watched the new production of the musical “Charlie and the Chocolate Factory”. It had shades of “Oliver”, a touch of Tim Burton and a nudge of pantomime. I’m sure it will be in for a long run.

After the show, as a treat for Tabby, we got one of the cycle rick-shaws back to the hotel – or tried to! I think we knew our way around London better than the driver did. After 10 minutes we were actually further away from our hotel than when we started. He had free-wheeled all the way down to Trafalgar Square! We now faced  a slight incline up to Soho when he told us he could not manage the hills – game over. It was a nice night for a stroll through ChinaTown anyway. All part of the tour.

On Friday we hopped back on our tour bus and hopped off again at “Harrods”! Legs are starting to get a bit tired after all this hopping. Harrods, as ever, was amazing, the pet department was Tabby’s favourite. I now know where you can buy a puppy for £8,000. We liked the doggy spa and grooming centre. After a little more retail therapy we headed off to the London Eye.

Giving it "The London Eye"

The queue for the London Eye was enormous. Good thing we had pre-booked the “Champagne London Eye Experience”. Does that sound smug? I hope so - into the Priority area, taken direct to the front of the line and straight into a pod with six others and a guide handing out glasses of champagne. It really was an unexpected highlight. On the way back along the South Bank Tabby wanted to stop and watch a young street performer doing amazing things with hoola hoops (not the edible variety). She was very good and was attracting quite a large crowd. She then grabbed me and another poor bloke to be her assistants. We had to give her “a leg up” onto her performing  platform then hand her hoops as required. Having to wear a red feather boa, however, was the difficult part.

No comment!

Anyway, Tabby has now just returned from theatre and, as ever, is amazingly bright and perky. The nurse has just gone off to get her some toast and a glass of juice. The “Clown Doctors” children’s entertainers have arrived and are making Tabby laugh. After her spinal chemotherapy, Tabby has to remain on bed rest for 2 hours. So another afternoon of arts and crafts. Anyone want a freshly painted pink china piggy-bank?

 

Thanks for reading

 

The Lawsons  

"Bucking Broncos" and "Horrible Histories"

Well can you believe it we’ve actually had a bit of a summer and done things you do in summer. This post is testament that we have had at least 5 days of sunshine.

On the last blog I mentioned that Tabby had been getting tennis lessons. The following week she was asked to play for David Lloyd u8’s against Mortonhall. As they say, “It’s not the winning.......” Although she won one of her games, Tabby was a bit annoyed with her principal coach (me) as we hadn’t quite got on to overhead serves yet. This has now been rectified!

One of the highlights of the last month was our BBQ, which happened to coincide with the sunniest and hottest day of the year so far. We were so lucky! Donella decided that we should hire a “Bucking Bronco” for the occasion – a bouncy castle for adults. I have to say it looked a lot more like a giant hamster than any form of horse or bull. However, for those of you who have never ridden a “Bucking Hamster”, it was great fun. As you can see Tabby was laughing fit to burst.



See it's a hamster!



The following day, Donella and Tabby were at Craigie’s  Farm open day helping Lynne McNicoll at the ”It’s good 2 give” charity stall. Again the sun shone, the farm was packed and more burgers were eaten. With the Pedal for Scotland Glasgow-Edinburgh cycle ride coming up we tried to encourage people to join our “Pedal 4 Paul”. Hopefully we made some useful contacts.

I defy you to get this picture the right way up!

The next thing that usually gets rained off in a summer deluge is the school sports. But Hey! – yet again clear blue skies, birds singing, the sound of children laughing and cheering, the pistol-crack of one dad’s Achilles tendon snapping in the father’s race......! Anyway the children had a good day and Tabby was running and winning and determined as ever. This was an amazing contrast to last year when she was really weak and struggling to run at all. Long may this progress continue.

Over the last few years, Tabby has loved to read the “Horrible Histories” series of books. Written by Terry Deary these books focus on certain periods and places in history and pick out the more gruesome and often pooey aspects of the time – thus a universal appeal to children. “It’s good 2 give” arranged for Terry to take part in an open top bus, historical tour around Edinburgh. He then signed copies of his books for the children. Olivia took Tabby along for the trip.



Terry signing his book for Tabby



The "It's good to give" team



Over the last couple of weeks Tabby has had a cough and sniffles. As her immune system is still pretty compromised we took her back to the “Sick Kids” Hospital last week. Lots of swabs and blood tests later it appeared Tabby was fit to return home. The ward phoned a couple of nights ago to let us know they had identified  a “rhinovirus” as the cause of her cough. This is a fairly harmless virus but it’s name causes no end of amusement to Tabby.

Anyway, summer holidays are now upon us. Amidst  everyone’s travel plans to far off places, Tabby really cannot go far away for any length of time because of her ongoing treatment and susceptibility to infection. Donella and I  hope we may sneak her a few days in London or go to see Grannie and Grandpa in Lochcarron. Despite all this Tabby just doesn’t complain although, it has to be said, she is compiling quite an extensive list of places she wants to go on holiday to when her treatment finishes next May!

Last of all, I have been the chance to climb Kilimanjaro in aid of our local childrens cancer charity “It’s good 2 give”. When first suggested last year, we had no idea how Tabby would be doing so were not keen on going far away for any length of time. As you can see she is making good progress and so when the chance came up! I now have 3 months to get fit and raise a lot of sponsorship. If you fancy sponsoring me, I have set up a site as follows;

www.virginmoneygiving.com/GRAHAMLAWSON

Thanks for reading,

"Ride 'em cowgirl"

Birthdays and Bicycles

My apologies to those of you who have been looking for the next update. My last blog post was 7 weeks ago – oops! I am pleased to report that Tabby has been pretty well and the last few weeks have flown by.

We all had time off over the second Easter week and so it was good to potter around and catch up on things.

Although not exactly ice-cream weather, on the Tuesday, Tabby and I went for a walk around South Queensferry and an ice cream .

 On the Wednesday, Tabby had her routine check-up at the “Sick-Kids”. I don’t normally get the opportunity to take her so I was keen to see how things were going. We arrived too early (a Lawson trait) so killed some time in Starbucks before going to see Dr Thomas, Tabby’s consultant. It was all very friendly and relaxed and Tabby just giggled non-stop throughout. It must be very hard to listen to the chest of a giggling 7 year old. Tabby asked something about her treatment – I can’t remember exactly what – to which the reply was “Not usually, but you’re special!” More giggles. Tabby is special but we are also so lucky to have such wonderful care at the “Sick Kids”.

Later that day we went to Dunblane and stayed overnight at the Hydro. After a visit to the Cathedral Tabby Donella and I went to the hotel swimming pool (no pictures!) Tabby’s crawl stroke now beats my breast stroke. We had a lovely meal in the “Nick Nairn” restaurant although having commenced her week of steroids, Tabby’s appetite was faltering. With horizontal rain the next day we didn’t bother about Blair Drummond Safari park and went home.

Tabby in the grounds o Dunblane Hydro Hotel - with a friend

On the 25^th, Tabby had her 8^th Birthday. She opened some of her presents in the morning before going to school where her class sang “Happy Birthday” to her and classmate Beth who also had her Birthday on 25^th April.

Birthday Girl

In time honoured tradition we went to Pizza Express for Tabby’s Birthday tea. The following weekend, Tabby, Beth and and Ruby had a combined Birthday “Street-Dance” party. I had to send my apologies as I was cycling the Kinross Sportive.

Quick blow them out before the smoke alarm goes off



Although the steroid laden  first week of each four-weekly cycle is hard going, much of the time Tabby is well and very active. She now has tennis lessons at David Lloyd as well as tennis lessons at school.  She is really good and can keep a rally going for ages.

Two weeks ago we went to Cramond foreshore to try out her Christmas present – a new bike. It was the first time she had been on a bike for a very long time. Her wobbly cycling just about matched my wobbly jogging.

A few Saturdays ago I returned from a long cycle ride and as ever (nearly) began cleaning my bike. Tabby saw what I was doing and wanted to do it for me. What can I say other than “What a girl!”

 

Thanks for reading,

Hopefully it should not be 7 weeks until the next post.

The Lawsons

Happy Easter

This time last year, Tabby was in the midst of her “Intensification” chemo regime but at least we were sitting out having   barbeques in the back garden. A year later Tabby is now on her less toxic maintenance regime but we have a garden under a covering of snow. Funny old world!

March kicked off with a three-way tie. Tabby went to Danielle’s birthday party and sleep-over, Donella went to the “It’s Good 2 Give” fundraising ball (where she gave an after-dinner speech about the charity) and I went on a skiing holiday to Whistler.

Tabby had a wonderful time at Danielle’s party with an entertainer and face painting followed by a sleep-over. What could be better? Donella hosted an all girls table at the “It’s good 2 give” Ball and has consequently now made it into “No. 1” Magazine – sharing the March edition with Liz Hurley, David Beckham, Karl Lagerfeldt and Beyonce. I suspect they are saying the same on their blogs! Whistler was pretty good as well – lots of snow and fine wine.



Where do you take a hungry post steroids 7 year old?



Continuing the Canadian theme, my cousin Mike who lives in Vancouver Island sent Tabby a beautiful gift of a silver necklace and bracelet. But these are special! They are made by a friend of Mike’s -  Richard Hunt, an awesome First Nations artist. They depict the “Sisiutl” a two headed sea serpent. It is a protector and if you ever found a scale of the sisiutl, it would bring you good luck. I am sure you will agree they are stunning. Mike – thank you so much.

Tabby’s chemo has continued to roll along as it has over the last few months. The usual 4 weekly cycle kicking off with a week of steroids and concommitant grumpiness and mood swings.  On this occasion, she missed a couple of days off school, did not make her Saturday morning swimming lesson and even missed Sunday School. The following day – back to normal. Throughout this time, I am always amazed how Tabby just takes all her tablets without batting an eyelid.



Daily ration of Tabby's Tabs



Two weeks ago was Poppy’s party – where they all learned to be cheer-leaders.

Last week Tabby took part in the school Primary 3 show “The Lemonade Kid”. This was a musical about... well... guns, shooting and drinking and all those things that happened in Western towns. The crime ridden town is then cleaned up by a cowboy who drinks lemonade. It was a little like Clint Eastwood in “High Plains Drifter” with a bottle of Irn-Bru! It was a super show. Tabby played the part of a cow-boy. Her hair is still a little too short to be a cow girl!

Yesterday – last day of term - Tabby woke up with a temperature! She had been suffering from a chesty cough for a couple of days previously. So it was back to the “Sick-Kids” Hospital. After a day of intra-venous antibiotics, Tabby’s temperature had dropped enough for her to be allowed home on a course of antibiotics – more tablets to add to the collection!

This morning Ewan flew off to Russia on a school trip so this evening we went into town and had dinner at ”Divino Enoteca” with Olivia as our designated driver! Whoopee!

 

Thank you for reading this Blog

Happy Easter,

The Lawsons

Sledging and Sushi



After  the excesses Christmas and New Year, life in Newmains house has slowly returned to some degree of normality. Olivia did not return to University until the end of January and it was so nice to have her around for a while longer. Tabby especially enjoyed an afternoon’s sledging up at Swanston Village in the Pentlands. It’s not often that we actually possess sledges when there is any snow around – so this was a good day.



Olivia and Tabby sledging



Tabby 'n' Tim

The following week Tabby had to go to the dentist. Despite everything that she has been through over the last year, a simple visit to the dentist remains something of a trial. However – all fears were allayed by the patient before her – Scottish Rugby’s try-scoring hero, Tim Visser. Tabby left with a filling and a new gum shield!

Once again, Tabby and I would like to thank Janet and Theresa from the Day Bed Unit at St.John’s Hospital for their gifts of sweets, comics and games. Tabby is currently in the middle of her “Steroid week” which invariably makes her grumpy, irritable and just generally out of sorts. Janet and Theresa’s latest bag of gifts worked wonders a couple of nights ago. I may actually  ask them to make up a goodie bag for me sometime – only to be opened in times of stress or excessive grumpiness.

It is a shame that Tabby’s “Grumpy-week” coincided with her class book week. On Friday Tabby had to dress up as a character from a book or a film. Tabby wanted to be “Dorothy” from the “Wizard of Oz”. We think she was one of the best in the class. We even managed to coax a smile out of her – sort of!

Lunch at Yo Sushi

I am sure I have mentioned the effect that Tabby’s steroids have on her. I feel so sorry for her as she is painfully aware in her sudden change in temperament. On the upside, however, the steroids serve to kick-start her often poor appetite. Sol ast weekend we had lunch at Yo Sushi. It should be noted that in the time it tookTabby and I to finish 6 dishes, the couple next to us polished of over 30 dishes between them. Tabby was mesmerised. She was scared to put her hat on the counter in case they ate it as well!



Anyway it is now half term holidays and Tabby, Ewan and Donella have headed North to spend a few days with Granny and Grandpa. Undoubtedly there will be a great deal of eating, dog walking and discussion. Tabby cannot wait to see “Maimie” – Granny and Grandpa’s little sausage dog. The two of them love running around the house, playing football and playing in the garden (that’s Tabby and Maimie I am talking about and not Grannie and Grandpa) Any pictures of them will be in the next blog.

I have no days off this week and so I am still in Edinburgh. The house seems strangely quiet and empty. Even the attraction of being able to watch SKY Sport whenever I wish doesn’t stop me wondering how Tabby and the family are. This is the furthest Tabby has been from home in over a year! This may be the time to see if I can get “Facetime” to work – any suggestions anybody?

Thanks for reading the Blog,

The Lawsons